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Meet Abby: “I’m Abby, a self-taught digital artist, graphic designer, bookworm and cat mum to two fluffy babies. You’ll find me on social media @thecolourblindzebra I love being creative. I am autistic and have multiple chronic illnesses including postural orthostatic tachycardia syndrome, mast cell activation syndrome and myalgic encephalomyelitis. My illnesses mean that I mainly use an electric wheelchair when out of the house and for smaller trips (like going into a restaurant or coffee shop), I use my rainbow, zebra striped walking stick.
What’s the story behind the name @Colourblindzebra?
I have a mild form of colour blindness which means I struggle to see the differences between shades of colour—this is where the ‘colourblind’ part of the name comes from. Zebras are the mascot for rare diseases and often misdiagnosed/not widely known illnesses. This comes from the saying doctors are taught in medical school: “When you hear hoof beats, think horses, not zebras.” The saying teaches doctors to think about the most likely diagnosis or cause of a patient’s symptoms, but it misses the fact that zebras (rare and misunderstood illnesses) exist!
How does your disability impact your daily routine and activities?
My disabilities impact my daily life a lot from needing to take a plethora of medication throughout the day to keep me somewhat upright, to struggling with everyday activities like getting out of bed, and dealing with chronic pain and frequent joint subluxations. If I were to list all of my symptoms, this would quickly become a seriously long and tedious book series (if you’re someone who has multiple chronic illnesses, you’ll know what I mean).
Living with these symptoms means that I work for myself, which allows me to work around my health and make sure that I’m able to take time to rest when I need to (and also clear space for the never-ending cycle of hospital appointments).
How does your invisible disability impact your ability to travel, if at all?
My disabilities mean that I haven’t been able to travel abroad since I became ill. Not only would going on a plane be exhausting, but travel insurance would be astronomical. Travelling within the country means that we can still see beautiful places and pace travel as much as I need.
What challenges do you face while travelling?
The biggest challenge I face is the inaccessibility of places I visit when on holiday, like lifts being out of order, shops being too crowded with shelves and restaurants not providing allergen information or having allergy trained staff. We research everywhere we want to visit before we go to make sure they’re accessible and for restaurants, that there will be something I can eat.
How do you typically prepare for a journey?
Trying to rest as much as possible beforehand and trying to avoid anyone who might have a virus or bug; although I do this already on an everyday-basis, it is even more important before a trip away as I can be very unwell if I catch something.
Another way I prepare is by packing my suitcase a couple of days before and taking my time to do so. Brain fog and executive dysfunction mean that I can easily forget things that I will need on my trip, so ensuring I have a bit of “aha! I almost forgot to put that thing in my bag” time is helpful. It also allows me to pace a bit more and conserve my energy.
What mode of transportation is most comfortable for you during your travels?
I always prefer travelling by car, driven by a family member, as I can bring along all of the items I need to stay as comfortable as I can. It also means that we can stop off as many times as needed to have snacks, toilet breaks and the ability to move my stiff joints after they’ve been still for a long time.
Unfortunately all forms of travel cause my fatigue and joint pain to flare up, especially my hips, but I find that the car gives me a lot more freedom to stop when I need to stop and take breaks when I need them too.
Do you require any special assistance or accommodations while travelling?
I usually have my carer with me when I travel, which means they’re able to advocate for me when I’m feeling unwell. I’ve travelled by train once alone previously and I found this to be a smooth and accommodating experience. The train station staff made sure I got on the train with a ramp and directed me to the wheelchair space. They also contacted the station on the other end of my trip to ensure they’d be ready to help me off of the train.
How do you cope with stigma or misunderstandings while travelling?
Because I don’t travel outside of the UK, I cope mostly in the same way I would in non-holiday, non-travelling life. If I have the energy, I will try to educate anyone who shows a genuine misunderstanding. However sometimes I don’t want to or can’t explain, which can be frustrating and upsetting. In those moments, I take time to decompress and talk about it with my carer who understands how this can impact me.
What strategies do you use to make travelling more manageable?
I make sure to have days where I have time to rest in the hotel room or around the hotel. It’s not possible for me to go out everyday all day due to my symptoms, so having rest days is important. It helps if the hotel is pretty and has some places to explore (if I’m feeling up to it), but I always make sure to pack some hobbies like a book or my crochet. Wi-Fi is also non-negotiable!
Any favourite travel memories?
My most recent holiday was to the North East of England where I stayed in a 600 year-old castle. The room was in the magical courtyard area, with trees wrapped in fairy lights. I had the most relaxing and peaceful time there, spending many hours reading my book in front of the fire in the library bar area. When writing this, it sounds like a fairytale and that’s exactly how it felt! I was so thankful to be able to experience the castle and to be able to stay in an accessible room. Not many castles have accessible rooms available, as you can imagine, so it was a very welcomed surprise. Read about their accessibility here.
Is there one place you’ve visited that you can highly recommend?
I visited Manchester for my 21st birthday and it was such a joyful experience. Not only is the city relatively flat, but there are lots of restaurants that accommodate allergies and intolerances. If you’re a wheelchair user and/or someone with allergies and intolerances, I’d highly recommend Manchester and particularly Purezza for the most incredible pizza and allergy-aware staff.
Societal upgrades . . .
Travel assistance should be much easier to obtain! In an ideal world, we’d be able to get onto transport as easily as non-disabled people, but unfortunately we have to rely on others to be able to travel. All assistance for travelling has its problems—from troubles with booking, unclear information, stressful scheduling and turning up to find that your accommodations haven’t been met. These processes are inaccessible and mean that a lot of disabled people can’t travel. For me, I have to rely on my carer for lots of parts of this process as without her, I would struggle with arranging everything on my own.“
Visit Abby on social media: Facebook, Instagram and her blog.